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Report: Doctors skittish of revealing Alzheimer's diagnosis

Study shows 63,000 in Iowa have the disease

The Alzheimer's Association East Central Iowa, photographed in the association's Cedar Rapids offices on Friday, Oct. 24
The Alzheimer's Association East Central Iowa, photographed in the association's Cedar Rapids offices on Friday, Oct. 24, 2014. (Liz Martin/The Gazette)

Someone develops Alzheimer's disease every 67 seconds in the United States, according to the Alzheimer's Association. But a new report found that less than half of those with the disease were given the diagnosis by a doctor.

The report, put out Tuesday by the Alzheimer's Association, found that those with Alzheimer's or their caregivers were more likely to learn of the diagnosis only after the disease had become more advanced, often because doctors did not want to cause the patient emotional distress. Doctors sometimes skirt the issue, officials said, telling patients only more broadly that they have dementia.

“These disturbingly low disclosure rates in Alzheimer's disease are reminiscent of rates seen for cancer in the 1950s and '60s — when even mention of the word 'cancer' was taboo,” said Beth Kallmyer, vice president of constituent services for the Alzheimer's Association, in a statement.

Projected Alzheimer's numbers in Iowa, age 65+

The Alzheimer's Association advocates for earlier diagnoses so those with the disease have more time to create care plans and deal with legal or financial issues that need to be settled.

Dr. Larry Krain, a neurologist at the Physicians' Clinic of Iowa, said doctors are able to diagnose Alzheimer's by identifying a number of things, including progressive loss of memory, word finding difficulty and challenges with problem-solving. Krain added that doctors typically perform additional tests, like an MRI, to rule out other problems.

“Most neurologists are quick to point out and tell a patient or family,” he said, adding that the study could be focusing on family practice physicians. “I'm not certain why the reluctance would occur.”

In 2015, more than 5.3 million Americans have Alzheimer's — including 63,000 in Iowa, according to the report. That number is projected to rise to 13.8 million Americans by 2050 and 73,000 Iowans by 2025.

More than 1,200 Iowans died from the disease in 2012, according to the report, which makes Alzheimer's the sixth leading cause of death in Iowa and gives the state the fifth highest death rate in the country.

Angelica Vannatta, manager of community outreach and special events for the Alzheimer's Association of East Central Iowa, said there are several reasons for this increasing number of Alzheimer's diagnoses, including greater awareness of the disease and Iowa's aging population.

She noted that age is a key factor in a person's probability of developing the disease, which may explain why so many more women have the disease than men — they typically live longer.

The report found that or two-thirds of Americans over age 65 with Alzheimer's, or 3.2 million, are women.

“People are living longer and as death rates fall for other diseases, they haven't fallen for Alzheimer's,” Vannatta said.

That's because while there are treatment plans and cures for diseases like diabetes or cancer, there is no way to slow the progression of Alzheimer's, she added.

The report also looked at the financial impact the disease has on caregivers and patients — finding the cost of caring for those with Alzheimer's and other dementias is estimated to total $226 billion in 2015, of which $153 billion is the cost to Medicare and Medicaid. This will increase to $1.1 trillion by 2050.

Long-term care is expensive, Vannatta said.

“You can't just pop a pill and everything will be OK,” she said.

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